A mom's blog about the mostly ups and sometimes downs of raising a child with autism.

Wednesday, January 4, 2012

Leave It To Winnie

2012 tumbled in like salty, fidgety waves, knocking us off our haunches, ill prepared and dazed by the rushing of time. My husband and oldest son headed to Boise for a New Year’s weekend of hockey while Sean and I held down the fort, trying to fill the final three days with activities and movement while maintaining laundry and sanity at the same time.

Almost three weeks off of school and Sean had been itching for more of a schedule and I was near a fever for life to return to normal (kids back at school, caught up with work and chores). The pine needles from the Christmas tree shed like dust across the floors and the fireplace and I counted down the days of Christmas like a rocket ship readying for blast off.

On New Year’s Eve Sean and I went to Red Robin to burn up a gift card. Sean promptly mumbled his order to the hostess,

“How many for dinner?”

“Chicken strips and Sprite. And Ketchup.”

“I’m sorry?” she smiled, pressing the menus against her chest and bending down toward him to get a better listen.

“It’s okay. He’s just telling you what he wants. Sean, she’s the hostess. You have to get seated and then you can tell the waitress.”

We went at 3:30 in the afternoon. A nice lull in the day, the tvs set at a lower hush and the booths and tables barely full.

He proceeded to take off his hoody, his t-shirt peeling off too,

“Okay, Muscles, you gotta leave that on,” I said, grabbing the bottom of his shirt and pulling it back down, covering up the flash of frog belly white ribs and stomach that appeared.

He unwrapped the crayons from the cellophane and began to write letters. He spelled Edward. Then Evan. Next was Kangaroo. Followed by Lizard.

The waiter sidled up next to us asking if he could start us out with something to drink. Sean gave his spiel and I gave my order as well – our restaurant experiences hadn’t been stellar in the past so thought it best to move things along.

Sean did remarkably well. He didn’t try to wrestle the top of the ketchup and slam 16 ounces “down in one” chug. He used his napkin. He said thank you. He did announce that he had “to pee” pretty loudly but did a good job of using the washroom by himself and washing his hands.

I paid the bill and we headed over to the bookstore to let Sean pick out a book with a gift card. Sean headed towards the back shelves where the kids' books were and I let him explore a bit on his own. I looked at the new fiction and checked out some of the juvenile fiction. A few minutes later Sean came up to me with the book he selected – a large Winnie the Pooh book with buttons on the side that made cute, little kid noises. It was the type of book you would buy for a toddler, certainly not a boy who will be turning eleven in a few days.

A weight of deep sadness sank like a stone in my chest as I watched him cradle the book in his arms, holding it and pushing the buttons. I saw all the Harry Potter books and the Diary of a Wimpy Kid series and the other, clearly more age appropriate books that surrounded him. And here he was, a boy of almost eleven, clinging to a child’s book, with no sense of awareness or any kind of embarrassment, his eyes wide with delight and a lovely smile.

I have been wrestling with how I have been feeling about this – I’m not sure why this moment held such sinking grief for me. I suppose if he is happy that should be enough. It shouldn’t matter. But it does, you know. It makes me afraid. I am worried at how vulnerable he is. How little he still remains. How small he really is. And how necessary it is to soldier on and protect him and be there for him.

Even trying to write about this has been a major roadblock in my mind and heart. I don’t know if I can really articulate it well at this point or if I have to just compartmentalize it for the time being, for the sake of it all, to be able to move forward, to avoid that sinking feeling.

I did do some searching and stumbled across something that gave me pause. In all places it was from the author of Winnie the Pooh himself, A. A. Milne. What he wrote rang so completely true to what I felt when I saw Sean with the toddler book that I felt sloppy tears hit the keyboard as I read it. It said,

“If ever there is tomorrow when we're not together... there is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.”

I hope that’s true. That those words are not only my words for Sean but also Sean’s words for me and that somehow we both can live up to that promise. For the time being, it softens the idea of Sean alone in the world, holding onto a child’s book. It gives me some sparkle of hope that we all have a reserve of strength and courage greater than what we know or understand.

7 comments:

Katie, I check my face book now and then. Well this morning before going to work I decided to check it and I saw your post. I was unaware that your son has autism. I guess because we connected on FB but haven't spoken or seen each other in years. As I read your story, it made me cry, from one mother to another we love our children with all our heart and want whats best for them. My son doesn't have autism so I can't say I know what you are going through, but I can say Sean is blessed with the best mother God could have given him. You have always been kind, compassionate, sweet, tender hearted and much more. It's LOVE that gets us through all that we go through in life. And Love is what I heard clearly in your voice as I read your blog. Continue to have fun quality time with Sean, and embrace all that God has given you. God will give you the strength and wisdom you need to continue to provide Sean with all that he needs. Sean is an awesome looking young man, may he continue to grow and be adventurous and accomplish things in life that will surpass all labels placed on children with autism. Keep on sharing :) Laura F. C.

Katy,These feelings are so raw and real for a parent of a child like Sean. Every parent feels this somewhat, but when the child faces challenges beyond his abilities it takes much more courage and insight. Thankfully, you share your insight with us. One thing that really helps is knowing we are not alone.

Hello Katy! I haven't had a minute to keep up on my blog or my friends' but had to check on yours tonight. I am so happy you are still writing. Ahhh, grieving is always part of the process. Thanks for sharing this. I hope to see you during some book event. Our book, Perfect Chaos, will be released in May and is already on Amazon, B & N for presales. Amazing. FB friend me and we will let you know when we are in your community!! Take care. You are such a good Momma! Cinda

Katie, this post brought me to tears! I absolutely love reading your words! I have struggled to cope with my daughter's diagnosis with autism. She does not want to talk and it has been so difficult for me to handle. I am trying to show her the importance of using words to get what she needs, but she simply refuses. I have been doing some research and I am finding sites like http://onlineceucredit.com/edu/social-work-ceus-pcs to motivate her to talk. I have found some great advice on this site and I hope you do too!

Katy,I'm new to the blog idea and came across your through a post on FB. I have to say I understand completely! My son will be 12 in July and was diagnosed with ASD when he was 4. What I wonder is if the feeling of grief during situations like this and many others ever gets easier? I loved reading your blog and will most definitely be following from here on out! I have a hard time explaining to others how I'm feeling about situations we experience when they have no clue what I'm going through or can't really relate!

About Me

Currently, I am fulfilling the duties of Mom. Before this role I used to write and read poetry at the Poetry Slams at the Green Mill in Chicago and other cafes in the city. I am trying to find my way back to that, trying to incorporate this journey that I am on with my love of words and poetry.
I have two great boys, an equally great husband and a fairly lazy, unenthused cat. Add to that, I have lots of good, creative friends (one that manages to get me to go to the Shakespeare fest in Ashland,OR every year!!) and wonderful parents and siblings.
I am trying to learn to live in the moment, to jump in without too much analyzing and thought. This is new to me as I have always been considered a "worry wart". Wish me luck.

Helpful Resources

The Mom Blogs

Mt. Hood

Autism Study: Simons Simplex Collection Project

What is the purpose of this study?The Simons Simplex Collection (SSC) is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.

Whom should I contact to get more information?Emily Champoux, Project CoordinatorToll free: 1-800-994-9701 or 206-616-2889 Email: emchamp1@u.washington.eduAdditional SSC information available at: http://depts.washington.edu/uwautism/research/simonssimplexproject.html